PRIVACY POLICY
This privacy policy is effective as of 1st October 2023
The NCBRS Worldwide Foundation is a REGISTERED CHARITY IN ENGLAND AND WALES - NO. 1190194
(“us”, “we”, or “our”) means NCBRS Worldwide Foundation, Nicolaides Baraitser Syndrome (NCBRS) Worldwide Foundation or NCBRS Parent Support Group.
Your privacy is important to us. This Privacy Policy sets out the types of information that we collect from you when you contact us, sign up for our email communications, use our services and when you make a donation. This is in line with General Data Protection Regulation (GDPR) which came into effect on 25 May 2018.
The NCBRS Worldwide Foundation’s policy is to respect your privacy and comply with any applicable law and regulation regarding any personal information we may collect about you, including across this website www.ncbrs-worldwide-foundation.weebly.com and other sites we own and/or operate including our social media pages/groups and online platforms
Information We Collect
Information we collect includes both information you knowingly and actively provide to us when using or participating in any of our services and promotions, and any information automatically sent by your devices in the course of accessing our products and services.
Log Data
When you visit our website, our servers may automatically log the standard data provided by your web browser. It may include your device’s IP address, your browser type and version, the pages you visit, the time and date of your visit, the time spent on each page, other details about your visit, and technical details that occur in conjunction with any errors you may encounter. Please be aware we cannot personally identify you by these.
Personal Information
We may ask for personal information from you and about the child/adult diagnosed with NCBRS, which may include one or more of the following:
Legitimate Reasons for Processing Your Personal Information
We only collect and use your personal information when we have a legitimate reason for doing so. In which instance, we only collect personal information that is reasonably necessary to provide our services to you.
Collection and Use of Information
We may collect personal information from you when you do any of the following on our website:
We may collect, hold, use, and disclose information for the following purposes, your personal information will not be further processed in a manner that is incompatible with these purposes:
Please be aware that we may combine information we collect about you with general information or research data we receive from other trusted sources.
Where Your Data is Stored
We keep your data stored on GoogleSuite and our NCBRS Facebook private group (approved members/families only). A copy of which can be stored on any one of our board members' computers. All board members' computers and GoogleSuite access are password protected. We also store data on MailChimp to enable email communications with you.
Patient Registry Data
We are partnered with the Coordination of Rare Diseases at Sanford (CoRDS) who is collecting data on our behalf for our Global Patient Registry. The registry is not managed directly by us but de-identified data can be shared with us if you agree to. You can view the way CoRDS handle your data by clicking the link below:
Keeping Your Data Secure
Access to your information is restricted to board members, formal volunteers, and partners who need it to perform their work and who may only access this data in accordance with Data Protection laws.
Security of Your Personal Information
When we collect and process personal information, and while we retain this information, we will protect it within commercially acceptable means to prevent loss and theft, as well as unauthorised access, disclosure, copying, use, or modification. Although we will do our best to protect the personal information you provide to us, we advise that no method of electronic transmission or storage is 100% secure, and no one can guarantee absolute data security. We will comply with laws applicable to us in respect of any data breach.
How Long We Keep Your Personal Information
We keep your personal information only for as long as we need to. This time period may depend on what we are using your information for, in accordance with this privacy policy. If your personal information is no longer required, we will delete it or make it anonymous by removing all details that identify you. However, if necessary, we may retain your personal information for our compliance with a legal, accounting, or reporting obligation or for archiving purposes in the public interest, scientific, or historical research purposes or statistical purposes.
Children’s Privacy
We do not aim any of our products or services directly at children under the age of 13, but we do collect information about a child under the age of 13 who is diagnosed with NCBRS to enable us to see the stats of people diagnosed with NCBRS, some of the information we collect may include one or more of the following:
Disclosure of Personal Information to Third Parties
We may disclose personal information to:
You can view the way our third-party companies that we use, handle your data by clicking the links below: We never buy or sell data to any third party.
Online Donations and Purchases
When using our secure online donation page, sending a cheque, bank transfer or purchasing our merchandise and/or products online, you are going through to a partner company and the information you provide, such as your credit card number and contact information is provided to them so the transaction can take place. Below are the companies we use for these services. You can click on them to find out how they use and store your data:
International Transfers of Personal Information
The personal information we collect is stored and/or processed where we or our partners, affiliates, and third-party providers maintain facilities. Please be aware that the locations to which we store, process, or transfer your personal information may not have the same data protection laws as the country in which you initially provided the information. If we transfer your personal information to third parties in other countries:
Your Rights and Controlling Your Personal Information
You always retain the right to withhold personal information from us, with the understanding that your experience of our services may be affected. We will not discriminate against you for exercising any of your rights over your personal information. If you do provide us with personal information you understand that we will collect, hold, use and disclose it in accordance with this privacy policy. You retain the right to request details of any personal information we hold about you.
If we receive personal information about you from a third party, we will protect it as set out in this privacy policy. If you are a third party providing personal information about somebody else, you represent and warrant that you have such person’s consent to provide the personal information to us.
If you have previously agreed to us using your personal information for direct marketing purposes, you may change your mind at any time. We will provide you with the ability to unsubscribe from our email database or opt-out of communications. Please be aware we may need to request specific information from you to help us confirm your identity.
If you believe that any information we hold about you is inaccurate, out of date, incomplete, irrelevant, or misleading, please contact us using the details provided in this privacy policy. We will take all reasonable steps to correct any information found to be inaccurate, incomplete, misleading, or out of date.
If you believe that we have breached a relevant data protection law and wish to make a complaint, please contact us using the details below and provide us with full details of the alleged breach. We will promptly investigate your complaint and respond to you, in writing, setting out the outcome of our investigation and the steps we will take to deal with your complaint. You also have the right to contact a regulatory body or data protection authority in relation to your complaint.
Social Media and Other Websites
Our social media pages/groups are regularly monitored by us. However, we have no control over the information you and/or others submit, post or share on our social media pages and groups or other websites – even when we link to them from our own website or they link to our website. When you use these sites you do so in accordance with their terms and conditions and privacy policies.
You can view the way our third-party social media platforms handle your data by clicking the links below:
Use of Cookies
We use “cookies” to collect information about you and your activity across our site. A cookie is a small piece of data that our website stores on your computer, and accesses each time you visit, this is so we can understand how you use our site. This helps us serve you content based on the preferences you have specified.
Limits of Our Policy
Our website may link to external websites that are not operated by us. Please be aware that we have no control over the content and policies of those sites, and cannot accept responsibility or liability for their respective privacy practices.
Changes to This Policy
We reserve the right to revise and change our privacy policy to reflect updates to our business processes, current acceptable practices, or legislative or regulatory changes at our discretion. If we decide to change this privacy policy, we will post the changes here at the same link by which you are accessing this privacy policy.
Contact Us
Please contact us if you have any questions about this policy or the information we hold about you by emailing: [email protected]
You can read our "Terms and Conditions" by clicking here...
You can read our "Disclaimer" by clicking here...
The NCBRS Worldwide Foundation is a REGISTERED CHARITY IN ENGLAND AND WALES - NO. 1190194
(“us”, “we”, or “our”) means NCBRS Worldwide Foundation, Nicolaides Baraitser Syndrome (NCBRS) Worldwide Foundation or NCBRS Parent Support Group.
Your privacy is important to us. This Privacy Policy sets out the types of information that we collect from you when you contact us, sign up for our email communications, use our services and when you make a donation. This is in line with General Data Protection Regulation (GDPR) which came into effect on 25 May 2018.
The NCBRS Worldwide Foundation’s policy is to respect your privacy and comply with any applicable law and regulation regarding any personal information we may collect about you, including across this website www.ncbrs-worldwide-foundation.weebly.com and other sites we own and/or operate including our social media pages/groups and online platforms
Information We Collect
Information we collect includes both information you knowingly and actively provide to us when using or participating in any of our services and promotions, and any information automatically sent by your devices in the course of accessing our products and services.
Log Data
When you visit our website, our servers may automatically log the standard data provided by your web browser. It may include your device’s IP address, your browser type and version, the pages you visit, the time and date of your visit, the time spent on each page, other details about your visit, and technical details that occur in conjunction with any errors you may encounter. Please be aware we cannot personally identify you by these.
Personal Information
We may ask for personal information from you and about the child/adult diagnosed with NCBRS, which may include one or more of the following:
- Name
- Date of birth
- Gender
- Year diagnosed
- Phone/mobile number
- Home/mailing address
Legitimate Reasons for Processing Your Personal Information
We only collect and use your personal information when we have a legitimate reason for doing so. In which instance, we only collect personal information that is reasonably necessary to provide our services to you.
Collection and Use of Information
We may collect personal information from you when you do any of the following on our website:
- Enter information on any of our sign up/registrations forms and surveys
- Sign up to receive updates from us via email or social media channels
- Use a mobile device or web browser to access our content
- Contact us via email, social media, or on any similar technologies
- Use Facebook and/or Messenger to contact us
- When you mention us on social media
- Personal data you share with us when you place orders for merchandise or make a donation via cheque, bank transfer, PayPal or on our website.
- Information to the product or service you are signing up for when registering with us,
- Questions, queries or feedback you send us via email, post on our social media channels and/or our website and online platforms
- Information you post on our social media channels and our online platforms.
- Information given in person during an event or meeting with a member of the Board or volunteer.
We may collect, hold, use, and disclose information for the following purposes, your personal information will not be further processed in a manner that is incompatible with these purposes:
- to contact and communicate with you
- for analytics, market research, and business development, including to operate and improve our website, associated applications, associated social media platforms and online platforms
- for advertising and marketing, including sending you promotional information about our products and services and information about third parties that we consider may be of interest to you
- for internal record keeping and administrative purposes
- to offer additional benefits to you
- to comply with our legal obligations and resolve any disputes that we may have
- for security and fraud prevention, and to ensure that our sites and/or apps are safe, secure, and used in line with our terms and conditions
Please be aware that we may combine information we collect about you with general information or research data we receive from other trusted sources.
Where Your Data is Stored
We keep your data stored on GoogleSuite and our NCBRS Facebook private group (approved members/families only). A copy of which can be stored on any one of our board members' computers. All board members' computers and GoogleSuite access are password protected. We also store data on MailChimp to enable email communications with you.
Patient Registry Data
We are partnered with the Coordination of Rare Diseases at Sanford (CoRDS) who is collecting data on our behalf for our Global Patient Registry. The registry is not managed directly by us but de-identified data can be shared with us if you agree to. You can view the way CoRDS handle your data by clicking the link below:
Keeping Your Data Secure
Access to your information is restricted to board members, formal volunteers, and partners who need it to perform their work and who may only access this data in accordance with Data Protection laws.
Security of Your Personal Information
When we collect and process personal information, and while we retain this information, we will protect it within commercially acceptable means to prevent loss and theft, as well as unauthorised access, disclosure, copying, use, or modification. Although we will do our best to protect the personal information you provide to us, we advise that no method of electronic transmission or storage is 100% secure, and no one can guarantee absolute data security. We will comply with laws applicable to us in respect of any data breach.
How Long We Keep Your Personal Information
We keep your personal information only for as long as we need to. This time period may depend on what we are using your information for, in accordance with this privacy policy. If your personal information is no longer required, we will delete it or make it anonymous by removing all details that identify you. However, if necessary, we may retain your personal information for our compliance with a legal, accounting, or reporting obligation or for archiving purposes in the public interest, scientific, or historical research purposes or statistical purposes.
Children’s Privacy
We do not aim any of our products or services directly at children under the age of 13, but we do collect information about a child under the age of 13 who is diagnosed with NCBRS to enable us to see the stats of people diagnosed with NCBRS, some of the information we collect may include one or more of the following:
- Name
- Date of birth
- Gender
- Year diagnosed
- Location
Disclosure of Personal Information to Third Parties
We may disclose personal information to:
- a parent, subsidiary, or affiliate of our company
- third party service providers to enable them to provide their services, for example, hosting and server providers, advertisers, or analytics platforms
- our employees, board, volunteers, contractors, and/or related entities
- our existing or potential agents or business partners
- sponsors or promoters of any competition, sweepstakes, or promotion we run
- courts, tribunals, regulatory authorities, and law enforcement officers, as required by law, in connection with any actual or prospective legal proceedings, or in order to establish, exercise, or defend our legal rights
- third parties, including agents or sub-contractors, who assist us in providing information, products, services, or direct marketing to you third parties to collect and process data including - Salesforce, MailChimp, GoogleSuite & Zoom
You can view the way our third-party companies that we use, handle your data by clicking the links below: We never buy or sell data to any third party.
Online Donations and Purchases
When using our secure online donation page, sending a cheque, bank transfer or purchasing our merchandise and/or products online, you are going through to a partner company and the information you provide, such as your credit card number and contact information is provided to them so the transaction can take place. Below are the companies we use for these services. You can click on them to find out how they use and store your data:
- PayPal
- NatWest
- Redbubble
- GoFundMe
- JustGiving
- EasyFundraising
- PayPal Giving Fund - (FaceBook Fundraisers)
- Visufund
- Stripe
- DonorBox
International Transfers of Personal Information
The personal information we collect is stored and/or processed where we or our partners, affiliates, and third-party providers maintain facilities. Please be aware that the locations to which we store, process, or transfer your personal information may not have the same data protection laws as the country in which you initially provided the information. If we transfer your personal information to third parties in other countries:
- we will perform those transfers in accordance with the requirements of applicable law; and
- we will protect the transferred personal information in accordance with this privacy policy.
Your Rights and Controlling Your Personal Information
You always retain the right to withhold personal information from us, with the understanding that your experience of our services may be affected. We will not discriminate against you for exercising any of your rights over your personal information. If you do provide us with personal information you understand that we will collect, hold, use and disclose it in accordance with this privacy policy. You retain the right to request details of any personal information we hold about you.
If we receive personal information about you from a third party, we will protect it as set out in this privacy policy. If you are a third party providing personal information about somebody else, you represent and warrant that you have such person’s consent to provide the personal information to us.
If you have previously agreed to us using your personal information for direct marketing purposes, you may change your mind at any time. We will provide you with the ability to unsubscribe from our email database or opt-out of communications. Please be aware we may need to request specific information from you to help us confirm your identity.
If you believe that any information we hold about you is inaccurate, out of date, incomplete, irrelevant, or misleading, please contact us using the details provided in this privacy policy. We will take all reasonable steps to correct any information found to be inaccurate, incomplete, misleading, or out of date.
If you believe that we have breached a relevant data protection law and wish to make a complaint, please contact us using the details below and provide us with full details of the alleged breach. We will promptly investigate your complaint and respond to you, in writing, setting out the outcome of our investigation and the steps we will take to deal with your complaint. You also have the right to contact a regulatory body or data protection authority in relation to your complaint.
Social Media and Other Websites
Our social media pages/groups are regularly monitored by us. However, we have no control over the information you and/or others submit, post or share on our social media pages and groups or other websites – even when we link to them from our own website or they link to our website. When you use these sites you do so in accordance with their terms and conditions and privacy policies.
You can view the way our third-party social media platforms handle your data by clicking the links below:
Use of Cookies
We use “cookies” to collect information about you and your activity across our site. A cookie is a small piece of data that our website stores on your computer, and accesses each time you visit, this is so we can understand how you use our site. This helps us serve you content based on the preferences you have specified.
Limits of Our Policy
Our website may link to external websites that are not operated by us. Please be aware that we have no control over the content and policies of those sites, and cannot accept responsibility or liability for their respective privacy practices.
Changes to This Policy
We reserve the right to revise and change our privacy policy to reflect updates to our business processes, current acceptable practices, or legislative or regulatory changes at our discretion. If we decide to change this privacy policy, we will post the changes here at the same link by which you are accessing this privacy policy.
Contact Us
Please contact us if you have any questions about this policy or the information we hold about you by emailing: [email protected]
You can read our "Terms and Conditions" by clicking here...
You can read our "Disclaimer" by clicking here...